We are thankful we were able to enjoy and love Dori for 10 incredible years. Never in a million years when we were given the terminal diagnoses of Mucolipidosis II as newborns did we know how much Dorian and Wynn would enrich our lives, fortify our family and multiply our faith in the Lord and in one another.
Little stinker never did anything he was supposed to do. He was joyfully as stubborn and feisty as anyone we've ever known. He was supposed to have a life expectancy of 3-7 years; he was a warrior for 10. He was supposed to be developmentally delayed, he turned into a musical connoisseur (he would raise his eyes and look up towards the right, intently study a new song and would nail the rhythm and chorus of a song after hearing it just once). He was supposed to have a bad heart; his big heart gave love and received love in the most fierce way he could. He was supposed to not be able to walk or crawl; in his healthier days he would zoom past us rolling laps around the house and around his brothers like an escaped rolling pin powered by a motor. He wasn't supposed to grow bigger than the size of a 18 month old baby; he was a giant firecracker with a sharp sense of humor who thrived on making people laugh. He couldn't do much of what "normal" kids could do, but he found his own majestic ways to do everything he wanted to do.
The day Wynnie passed away, I woke up with a gut feeling knowing that it would be his last day. I spent the entire day holding him and telling him it was ok for him to rest and go to heaven. I wanted to prepare him so I kept showing him pictures of my parents, pictures of Jesus and pictures of all of us so that he'd know to watch over us when he made it to heaven. Chris and I stuck by his side until he took his final breath, and it was a peaceful passing in our home surrounded by our hospice nurse, the night nurse, and Miss Marcia holding Dori all in the same room. From that day forward if you'd ask Dori where Wynnie was he'd say joyfully "HEAVEN!"
But on Dori's last day (this past Monday 1/14), I didn't see it coming. He had been under hospice care in our home for the past 3 years so we knew he wasn't "great" and his ability to breath had become more and more labored since November. In early November we didn't think he'd make it to Thanksgiving. But in typically Dori fashion he bucked our expectations and celebrated Thanksgiving with us. By mid December his health had deteriorated to the point where we didn't think he made it to Christmas. Of course we thought wrong. Big guy spent countless hours listening to Christmas music all the way through the holidays. January rolled around and both Chris and I had scheduled our business trips months ahead of time because sadly we thought he wouldn't had made it to the new year.
Chris packed for two back-to-back conferences in Las Vegas Monday morning and went twice into Dori's room to give him lots of kisses and tell him goodbye for the week. I had been holding Dori for a few hours while his nurse Lindsay assisted me in the background when I received a surprise text from Miss Viktoria (our beloved au pair from 2010-2013) that she wanted to swing by the house and see Dori. Within minutes she was holding him and talking to him and updating me on all the new adventures of her life. While she was holding him Dori was sleeping and calm. Since he was always connected to two breathing machines and the pulse oximeter he was surrounded by cords and tubing while she rocked him as he slept. His pulse ox machine began to alarm "no sensor" which happened often if his pulse ox probe was old, so I asked Lindsay to get him a new one. We kept switching his probes from one finger to another, from one toe to another and still the machine read "no sensor". At that point Lindsay took her stethoscope to listen to his chest but with all the machines humming loudly she said she couldn't hear anything. I turned off one of his oxygen concentrators and placed him on an actual oxygen tank to make it a bit more quiet in the room to allow her to hear better. When she looked up calmly and told me "I still can't hear anything" I placed the palm of my hand on Dori's chest and I felt nothing. Normally his strained heart would beat hard as if he had just ran a lap around the track. Nothing. Normally with his two breathing machines helping him to you could feel his chest going up and down. Nothing. I took Dori out of Viktoria's arms and held and kissed him completely shocked of what had just happened.
As I held him Viktoria consoled me and all three of us were crying while Lindsay called Hospice to come over to the house. I kept trying to get a hold of Chris but his flight had already left and he was somewhere in the air between Dallas and Las Vegas. I'm so thankful I wasn't home by myself, Viktoria and Lindsay kept me company while we all gave him kisses and told him how much we loved him. We had Marcia come over so she could help me get him ready to be taken away and I was finally able to hear from Chris once he landed. I felt so terrible that I had to break the news to him over the phone and I could hear the pain in his voice. Thankfully he was able to hop on a plane within minutes to come straight back home and my next concern was Ben and Alex. It was about an hour until I was supposed to pick them up from school so Viktoria immediately volunteered to pick them up and bring them home. At that point we informed all of Dori's nurses so if they wanted to come over and say goodbye to him they could. Mo and Kathy came over and all three of them bathed Dori and prepared him before the boys came home.
The funeral home people came about 15-20 minutes before the boys came home from school, thankfully their transport vehicle parked in front of our home was an unmarked black suburban, not a hearse nor did it have any funeral home logos or signage on it.
As the boys were getting out of the car with Miss Viktoria they were all smiles and laughing saying "We don't remember Miss Viktoria being so short!" When they came into the house I said "hey follow me into my room I need to tell you something."
"Are we in trouble?" asked Ben.
"No your totally NOT in trouble," I couldn't help but chuckle to think that's where his mind went.
As they walked through the French doors of the study towards the master bedroom Alex asked "Who are those people in the bar?"
I said, "that's what I'm going to talk to you about."
Last time when Wynnie died Chris woke them up and told them after the funeral home had come to pick Wynnie up, but this time since Dori was still home I had Marcia hold him and wrap him in some of his favorite Husker blankets that Aunt Verna from Nebraska had made them many years earlier. We dressed him in his sassy red and blue striped pants and his "Boss" shirt. He always loved his nurses to ask him "Are you the boss?" and he would proudly assert his authority and say yes. There wasn't a shirt that could personify his wit and his strength more than this one.
I told them boys we we had lots of tears and lots of hugs. After the boys and I regained our composure I offered them the option to say goodbye to Dori if they wanted to see him. I said "you don't have to if it makes you feel uncomfortable" but they both said they wanted to see him and give their final goodbyes. So they went into Dori's room to see him and hug him and give him a kiss on the forehead, and I was really proud of them because I could feel their love and their grief as they walked out of him room.
Why do I share all these details? I want Ben and Alex to remember this day, I want them to remember how much Dori loved them and how much he was loved by all. And honestly I don't want people to ask me "how did he die? how did it happen?" because it would be like a scab picked over and over again not allowed to heal.
We are so proud of the brave young man Dorian proved to be. We are proud of how hard he fought to live alongside us and love us. We are proud of how many people's lives he touched and made better by his presence. We are proud at how he made us better parents, better brothers, better nurses, better teachers and better friends. We are proud that he is finally free, finally able to break through all the restraints he had on this earth and finally in the loving arms of the Lord our God. But we are most proud that he is finally reunited with his twin brother and partner in crime Wynnie. He is finally seeing things that our eyes have never seen, he's hearing music so lovely our ears have never heard, and he is surrounded in love and warmth we have never felt until we are fortunate enough to be reunited with him again.
Thank you all for your thoughts and prayers, we feel your love and support for our family. This new normal will take a while to get accustomed to over the next few months. The house is awfully quiet... for the past 10 years we've had two babies, lots of loud life support machines (our house is like a miniature hospital), a revolving door of caring nurses and teachers, and the constant bustle of friends and family. We wouldn't have had it any other way.
In lieu of flowers or meals we request that you please help us with Dorian's Make-A-Wish North Texas legacy. As a Wish Kid three years ago when our specialists told us he had merely months (if not weeks) left to live, Dori was rushed a Wish to meet his favorite singer Ne-Yo. For someone that only had weeks to live, he turned the corner and lived for three more years and it was such a beautiful gift to our family. We want other families to feel that love and support from their community, and to give other Wish Kids the blessed hope and joy that a Wish brings. You can click here to help Dori grant Wishes for his friends.
Here is his obituary, and we'll be celebrating his memorial Mass tomorrow (Saturday 1/19) at noon at St. Rita. Details are in the obituary.
Thank you all for your love and support.
Make-A-Wish North Texas Legacy Page
https://secure2.wish.org/site/TR/WishYourWay/Make-A-WishNorthTexas?px=3569499&pg=personal&fr_id=3128&fbclid=IwAR10fsq2Ixk_lyoqKR0iaZL1dX1RAuASG349CtSJcGUF-DwAioCme_MmeF4#.XD9_pVxKiUn
Obituary
https://www.turrentinejacksonmorrow.com/obituaries/dorian-allen-johnson
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